European Journal of Palliative Care - 2018

One of palliative medicine’s first challenges after being accredited by the Royal College of Physicians, London, as a sub-specialty to general internal medicine in 1987, was to confront the prospect of evidence-based medicine. Joseph M Sawyer asks whether, as general medicine is integrated into specialist training in the UK, and hospices widely adopt quantitative outcome measures, there is a danger that palliative medicine develops in a way that limits its holistic potential. Editor Ros Taylor hopes that palliative medicine can evolve to incorporate both narrative and quantitative approaches and suggests that we need to move to an era that measures what matters to people, not just that which can be counted on an electronic record. She comments that death is still unspeakable in medicine, resulting in delays in the shift to a palliative approach and missed opportunities to heal.

A human rights approach to end-of-life care supports health and social care practitioners in making balanced, and often difficult, decisions with people at the end of life, in order to make personalised care a reality. The approach is based on the UK Human Rights Act, 1998, which outlines the legal duty of all practitioners to respect and protect the human rights of those in their care. Many practitioners are unaware of their legal duty under the UK Human Rights Act, and so, in collaboration with the British Institute of Human Rights, Sue Ryder developed a three-year training programme to educate and empower the end-of-life care workforce in the UK, to enable them to better understand their legal duty and to feel confident in embracing human rights as an integral component of end-of-life care. This paper presents the results from the first six months of implementation of the Sue Ryder training programme.

Elisabeth Earnshaw-Smith became the first director of social work at St Christopher's Hospice, London, in 1979, and introduced a family approach in psychosocial care that has now travelled the world. Her pioneering work, which was further developed by the multidisciplinary team at St Christopher's, remains at the core of what it is to be a social worker today in end-of-life care. The team at the hospice turned ‘the family as the unit of care’ into reality through the use of strategies from family therapy practice, including the use of family trees or genograms, family meetings and understanding the part that family dynamics play in the crisis of illness, death and bereavement.

Barry Ashpole presents a selection of abstracts that highlight new findings and trends in the diverse and rapidly expanding body of research in the field of palliative and end-of-life care.

Objective
People with severe mental illness (SMI) have a life expectancy 10–20 years lower than that of the general population. There is limited published research concerning the end-of-life care needs of people with SMI. This study seeks to understand the views and experiences of clinicians on the barriers to providing such care to people with SMI.

Methods
Four focus groups were convened for two cohorts – palliative care and mental health. In total, 23 clinical staff from a range of professional backgrounds attended the focus groups, which were facilitated using the ‘CUbe’ method to enhance the discussion. Data was analysed using an adapted framework analysis method. Key themes were developed and implications for clinical practice were identified.

Results
Barriers to care were identified as:

• The structure of the system
• The presentation of the patient
• The confidence of the clinician
• The problem of partnership.

Issues around clinician knowledge, skills, confidence and resilience across disciplines was a major finding.

Significance of results
The findings highlight the need for interventions and resources to be developed that support the improved confidence and knowledge of clinical staff. There is a need for further research that explores improvements to care, particularly focusing on improving the knowledge, skills and confidence of clinical staff.

In the seventh article in our series ‘Psychology in palliative practice’, Jenny Strachan looks at how distress, a common phenomenon at the end of life, affects the psychological well-being of patients receiving palliative care and that of their families. When is it a normal reaction and when is it so intense that it’s problematic or clinically significant? She advises on the process of adjustment, which allows people to find a new equilibrium that takes account of the disturbing changes in their lives, and on the different models devised to explain its operation. Jenny also outlines how coping strategies fit into the picture and gives guidance on identifying barriers to coping and working effectively with patients and families in distress to encourage them to find an equilibrium.

Introduction
Hospices and end-of-life organisations caring for dying people rely on volunteers to provide social, psychological and spiritual support roles. Volunteering offers flexibility and informality, but the role needs to be clearly established to protect volunteer and client.

Methods
This service evaluation explored the role of volunteer support in end-of-life care. There were two parts to the evaluation: i) service evaluation of a local UK charity, which relies on volunteers to provide support to adults with serious and life-limiting illness in their own homes when they are discharged from hospital; and ii) external expert reference provided by 11 hospices and end-of-life care charities. Content analysis was used to identify key areas within the interviews.

Results
Typical volunteer roles included offering practical and emotional support to their clients and sometimes to other family members. Maintaining professional boundaries was one of the difficult aspects of the volunteers’ role. Paid staff valued the additional support provided by the volunteers but had concerns about them becoming too involved with clients. The hospices and end-of-life care charities confirmed that while they used their volunteers in numerous ways, these were generally within clinical settings and not clients’ homes.

Discussion
Volunteers can perform important roles in people’s homes, which can alleviate the pressure on paid staff. Their role epitomises the current drive for more compassionate community initiatives. However, within this drive there needs to be explicit safe practice expectations to protect both volunteer and client.

Introduction
Specialist Palliative Care (SPC) at the end of life is much more available than it was 50 years ago. However, there is increasing evidence that patients with diseases other than cancer have difficulty accessing this specialist service.

Methodology
A retrospective case note review was carried out of referrals in 2012 to a SPC Service. Ten healthcare professionals were interviewed to determine their experiences.

Case note review findings
• 409 referrals were received in 2012
• 42% had a non-malignant diagnosis and 58% a malignant diagnosis
• All patients (100%) had contact from the SPC team within 2 days from the time the referral was made.

Results of interviews
Three main themes emerged from the interviews:

• The challenge of caring
• Experience of the SPC service
• Management of care of the dementia patient.

Conclusion
Healthcare professionals acknowledged the positive aspects of having SPC advice and support for dementia patients. Healthcare professionals face numerous challenges in delivering a palliative care approach to this cohort of patients.

Eighty percent of Nepal’s population live in rural areas. These are often remote due to the mountainous terrain making access to healthcare a challenge.

Palliative care has been developing in Nepal since 2000. Palliative care education provided by various organisations and supported by the government is available for healthcare professionals. Morphine is also produced in Nepal in palliative care formulations. However, palliative care services are mainly based in the capital, Kathmandu, and other large towns, and most people still do not have access to morphine.

A recent needs assessment estimated that around 62,000 adults and children need palliative care each year. This figure is likely to grow as increasing numbers of people suffer from non-communicable diseases.

In 2017, Nepal adopted a national strategy for palliative care that takes a public health approach, with a vision for making palliative care available to all those who need it, including those living in remote rural areas. It recognises that for this to become a reality, palliative care needs to be seen as part of universal health coverage and generalists, including rural health post workers and GPs, who lead clinical services in district hospitals, need to be empowered to deliver it.

In his review of With the End in Mind: Dying, Death and Wisdom in an Age of Denial, David Praill writes that Kathryn Mannix brings something extra to the conversation by aiming to re-educate us, to re-introduce us to a ‘lost vocabulary’ that will help us to navigate living while and through dying. Her particular genius is the open, moving and yet unsentimental way in which she clusters her stories, and subsequent aides to discussion and thought, under six themes, which makes the book so engaging, thought-provoking and practical.